Activity 30.4: Research and evidence-based practice
Read: Gaff et al. (2007). Process and outcome in communication of genetic information within families: A systematic review. Available at http://www.nature.com/ejhg/journal/v15/n10/full/5201883a.html
What are the main themes identified by the systematic review? How could you use these themes to provide person-centred care?
The three themes identified by the review are: deliberation before communication, communication strategies and outcomes of communication.
DELIBERATION BEFORE COMMUNICATION
The review found that patients compare the effects of disclosure (increased worry/psychological harm) with the risks of non-disclosure (health consequences). There is a desire to protect relatives from harm – but there can be perceived harm from both options. Patients often view the situation with particular concern for a relative’s physical or mental ‘vulnerability’ and ‘receptivity’ (the prediction of how the relative will respond). Providing realistic information about the risk posed by the diagnosis and likelihood of inheritance will help support them in their decision. It is important to understand the family dynamics and ‘closeness’ of the family network as that will influence the timing of the disclosure, i.e. whether that is during normal social contact if they see one another regularly, or an unusual meeting is required to facilitate discussion.
Difficulties were identified in communication for the patient, such as not being believed or a significant emotional response from the relatives. Particular problems were identified with incomplete information being given by the patient to the relative; whether that was due to passive failure to inform, lack of knowledge, protective action (only giving reassuring information) deliberately withholding of information or difficulty pursuing emotional conversation. Having an awareness of these potential difficulties can allow you to support your patient through the process of disclosure.
The review considers outcomes mainly in terms of uptake of genetic testing and the level of knowledge that relatives demonstrate. In immunodeficiency, familial testing is undertaken by the specialist team, so deficits of knowledge can be addressed at consultations, but it is important to understand that the relative may be coming to you with partial or incorrect information. Despite the knowledge of a relative as a fellow patient, confidentiality should be maintained and respect for individual’s privacy should be maintained.